When Your Family Is Impacted by Hereditary Cancer – An Interview with My Sister for HBOC Week

I am super excited to share this post with you, dear readers, for National Hereditary Breast & Ovarian Cancer Week (HBOC). If you’ve been reading Nancy’s Point for a while, you know I generally don’t talk a lot about my family members because I respect their privacy. Once in a while, I joke around with them threatening to “tell all” on the blog. But of course, I would never do that!

I am proud to introduce Kay, one of my older (had to get that in there) sisters who decided to go ahead with genetic testing after we learned our mother tested positive for the BRCA2 gene mutation.

Deciding to undergo genetic testing is a huge decision. It’s no surprise, Kay decided to be proactive, got tested and put a plan of action together early on. That’s what she does. Always has. This is just one of many things I admire about her. Then there’s me, the procrastinator. I could be the poster child for how not to handle this stuff. I found out I am BRCA2+ after my diagnosis. But I don’t beat myself up about all those what ifs. Not too often anyway.

But enough about me!

I asked Kay some questions and she was kind enough to agree to answer them in order to help others who might find themselves in similar situations. Thank you, Kay, for sharing about your experience with my dear readers.

An Interview with My Sister, Kay

Kay and I posing on the creaky, old stairs of our house on Central Ave North. Lots of mischief happened on and around those stairs.

Note: Comments in parentheses are mine.

1. When did you first start thinking about getting tested for the BRCA2 mutation?

Our mother received a letter from her (biological) sister’s family in 2006 stating her sister (at that point, deceased) carried the BRCA2 gene mutation. (Luckily, the sister’s family decided we should know this important information). This was after our mother’s breast cancer diagnosis in 2004. Her biological sister had had breast cancer. (She also had ovarian and later developed pancreatic cancer. She died from the latter. Two of our mother’s other sisters also had breast cancer. My somewhat complicated family history is explained in detail in my memoir). Since our mother had tested positive and had breast cancer, I wanted to know. My journey began in 2007.

2. Did you meet with a genetic counselor at any time? Did you find that helpful and if so, how specifically?

My siblings, mother, dad and I met with a genetic counselor. We went through the family tree, tracing all cancer history. We already knew a lot of this, so I can’t say I found it very helpful. To me, knowing close family members who had cancer was more important. However, the counselor was quite thorough explaining things and helped answer our questions.

3. What was your reaction when you tested positive for the BRCA2 mutation?

I was prepared for the worst – that’s just me. It was a huge let down, but not unexpected. My doctor and I had our first serious talk about prophylactic surgeries and discussed all the alternatives.

4. After testing positive, did you decide pretty quickly to have prophylactic surgeries, or did you think about things for a while?

I thought about it for a year. I decided to give alternatives a try. Surgeries are scary.

5. What types of prophylactic surgeries did you decide to have, when did you have them and in what order?

6. How did you prepare yourself for them? What was your recovery like?

I don’t recall doing anything special to prepare other than researching my options and discussing things with my doctors. I had my plan of action and was ready to proceed.

Bilateral oophorectomy was in and out, same day procedure. Recovery seemed pretty easy.

As for the bilateral, no one can prepare you for this surgery! It went well and my incisions healed alright. Minimal pain. My doctor recommended a series of pre-surgery spinal shots to control nerve pain. Highly recommend this.

Bleeder surgery was a surprise! Only 5% of women develop this and I was one. My doctors reopened my incision a tiny bit and “vacuumed” out the excess blood. Another day surgery. Fast recovery.

Implant surgery went well. Followed doctor’s instructions and had no problems.

I’m pretty sure she did. I had planned on reconstruction from the start.

8. What has been the hardest part in all this for you?

The hardest part is testing positive for this mutation and knowing I could pass it on to my kids.

9. Are you still glad you made the choices you did? Do you have any regrets?

I have no regrets with the choices I made. I like to be pro-active with my health.

10. Did you have any complications with your prophylactic mastectomy and/or reconstruction?

I already talked about the bleeder surgery, so there was that. My second complication was that my secondary lymphatic system was injured. I saw a lymphedema specialist who determined I did not have lymphedema as it most commonly presents following breast surgery – in a limb, but rather mine is likely a case of truncal lymphedema. I have excess fluid which moves daily. Some days, it is across the breast, sometimes it is on one side and sometimes both. Every day is different. I feel it every day, and I haven’t really found a product or garment to help much.

11. Are you satisfied with the results of your reconstruction? Do you ever miss your “old parts”?

I am satisfied. I never miss my old parts because they could give me a greater cancer risk – so good bye to them.

12. What has been the biggest challenge for you after your PBM?

My biggest challenge is dealing with the lymphatic system issue. It’s always there, 24/7. I sleep with a cool pack on each side every night. It’s the only thing I have found to somewhat help. Any long-term sitting – car riding, even a movie, is difficult. Exercise helps a little.

Do your research. You already know your family cancer history best. Alternatives are available. You don’t have to rush to surgeries, I used alternatives for three years. Medicine changes so fast, so know all your options.

14. What has it been like for you having both a mother and a sister diagnosed with breast cancer?

It’s been eye opening! I wouldn’t have gone through this process if it wasn’t for them and witnessing their experiences. I have another sister who has not been tested. She doesn’t want to know, and that is her right. My brother has not been tested either.

15. Do you still worry about getting cancer, even now after your surgeries?

Not really. I’ve done what I can and the rest is not up to me.

16. Has your family been supportive?

My family’s been very supportive. My husband has had quite an education also! All this affects him as well.

17. Any final thoughts?

Everyone has to live with the decisions they make. There is no right or wrong choice and there’s no need to feel rushed about making decisions. Cancer is scary and heredity (not just BRCA mutations) plays a huge role in some families. I have witnessed it up close in my immediate family. I am living with my decisions every day, thanks to the lymphatic system injury. Yet, I would do it all over again.

Thank you, Kay, for sharing!

Finally, I want to add, every family should think about delving into those “family secrets” in their DNA. Regardless of your situation, sit down, do a little digging and talk about your family tree (if possible). Learning about your family’s medical (and other) history, might be life-saving, or at the very least, interesting.

Thanks for reading, everybody!

All my siblings and me.

If applicable, does your cancer seem to have a genetic component, and have you had genetic counseling and/or testing?

Did you develop lymphedema following your breast surgery?

Are you contemplating a prophylactic surgery of any sort, or would you ever do so, if applicable?

8 thoughts on “When Your Family Is Impacted by Hereditary Cancer – An Interview with My Sister for HBOC Week”

I haven’t had cancer (yet?), but I have a family history – mother at a young age, maternal grandmother with bilateral cancer, cousin (on the father’s side) at a young age, plus my father’s two sisters who died of other cancers.
I also had a condition named ADH (atypical ductal hyperplasia) 2.5 years ago. It’s a benign condition that increases the risk of breast cancer to about 30% in the next 25 years.
My grandmother, cousin and I got tested and we’re all negative for the common mutations (in our case the Ashkenazi Jewish mutations). They don’t know what causes the cancer in my family… My sister hasn’t been tested yet.
I’m taking tamoxifen for risk reduction and do tons of scans. I’m pre-menopausal and I don’t want to remove my ovaries, but I’m contemplating a bilateral mastectomy. The doctors don’t have a clear cut recommendation in cases like my own – high but not BRCA-high risk. It’s a major decision. I probably would have done it if I had a known mutation.

Kay, I have lymphedema and helped create a website for women with lymphedema. I also worked in radiation oncology and truncal lymphedema is very, very common and difficult to treat, as you can’t wrap a trunk or breast.
But, there is treatment!
Here’s a link to the topic on our site: http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
The other founders deal with truncal lymphedema and things that work for them: 1) garments–wearease, jovipak or Tribute night vests, the Solidea garments–and strategic use of “swell spots. Other women use under armour shirts or Target brand Spanx tops–inside out to avoid chafing. 2) Manual lymphatic drainage–just the deep breathing and clearing the neck and the abdomen can help move that fluid off the trunk and 3) it hurts! When you say it’s 24/7–it is and so many clinicians don’t recognize it. I can put you in touch with the other women who created the website who can give you specific garment and treatment tips.
Thank you for sharing.
Often with lymphedema there’s a kind of sense that we shouldn’t be “complaining”, but it is a real disease and it stinks.
There is a lymphedema forum on breast cancer.org that has helped many women.
Again, thank you for sharing and let me know if I can help. I’m a physician, but I also trained as a lymphedema therapist to learn more.
I adore your sister’s blog.

Thank you for some more information on different garments. I just received the bellisse bra today. Nancy gave me that help. I have tried the under armour route. Didn’t help at all. Will check out the website too. Again thank you.